My First Lecture!

This past week, I was invited to speak about my Ushers and deafblindness to Deaf Culture class at my University. This was the same professor whom I've been taking ASL from. She was really excited to hear me talk about my own experiences. She did have a friend who was deafblind as well and spoke a bit about him. But somehow I got the feeling that I would be a strong speaker because I was actually there and closer to the students' age.

First, I had the kids help me draw the blinds and turn off the lights to make the room very dark. I explained to them that my birthday was on Halloween. Yeah, it's a lot of fun.... but when it came to trick-or-treating, I had mixed feelings. I liked running up to houses with bright lights... warm, inviting looking houses. But dark houses frightened me. My brother and his friends used to run up the sidewalk while I'd be navigating my way, trying to feel for the stairs, bushes, and what-not. By the time I'd make to the candy bin, my brother and his friends would run back out to our parents, who were waiting on the sidewalk. Here I was, a picky candy-eater (at the time, I did not like fruit-y candy nor chocolate with nuts). I only wanted Reese's Peanut Butter Cups, Milky Ways, M&Ms, Tootsie Rolls, Hershey's, etc. If there were no obvious, how could I pick apart Snickers from Milky Ways?

So I gave the kids two plastic bags. The first bag had a mix of fun-sized plain and peanut M&Ms. The second bag had a mix of fun-sized Snickers and Milky Ways. I told the students to decide what candy they really wanted before they put their hand in.

So while the bags made their way around (which seemed like forever!), I stood with my back to the chalkboard and talked in the dark. I was definitely a bit nervous because I couldn't see anything... I think my voice was shaking at times. I felt as if I was talking to nobody!

I covered:
--My diagnosis
--How my parents reacted when we first found out
--Types of Usher's
--Nightblindness
--My visual field (when the lights were back on, I drew a normal visual field, then drew my own for comparison on the chalkboard)
--Explanation of how the brain compensates for visual loss by "filling in" the "black spots"
--Visual reality and memory of being "able to see" in the dark
--What it's like for me to move to a new area and what I have to do each and every single time
--Driving (I did not talk about my car accident, but increased limitations and what I have to do in order to be safe like looking up sunset times before I head out and give myself 20 minutes radius if it's late afternoon)
--Nalaga'at Theater in Tel Aviv
--Importance of Touch for deafblindness, how important it's for me to be holding onto something stable, not always a person
--CI's role. During the day, I can depend on my vision and not my hearing, but at night, when I lose my vision, I have to depend on my hearing/CI.

I explained to them that being deafblind is like falling through a black hole. You don't know where you're going. You don't know where you are. You don't know who's around you. That is why Touch is so important. Touching something allows us to know that something exists, that there is a world out there.

After I was done lecturing, I must've covered so much ground that I didn't get any questions at the end! So I told the class that this candy exercise was just a way of helping them understand where I was (and other deafblinds and blind people were) coming from. I think once they realized that they didn't get the right bar (they did get the M&Ms right I think because I got mostly peanuts left). I spilled the secret of how to tell Snickers from Milky Way- press ever so gently in the center and you'll feel a peanut (or not). I also mentioned it's a challenge to be at a food buffet at any party, anything that involves picking out your own food/things/etc and the area is not well-lit. Sometimes we have to ask for help (I do almost always mainly because I keep kosher and don't eat pork or shellfish). I also told them that people are really decent and don't mind being asked to do a simple task.

Everyone really loved it all and a couple of students thanked me personally afterwards. I was very, very proud of myself.